So that was very powerful support for the decision that we had to help them make. But how we did it was based on information that we read that it’s very important to give your people that you’re caregiving choices. And so we literally looked at all of the assisted living facilities in Sumter and present them with a choice. It wasn’t home versus assisted living. It was which of these assisted living do you think would be appropriate for you. And we took my mother-in-law to visit and she was able to pick which one. And my father-in-law said if that was the one Addie would like then that worked for him.
Choosing Assisted Living from a Distance
Dick Foley: Right. And again in your case and in the case of so many caregivers, you and your husband are doing this from a distance and quite a distance.
Margaret: Yes. And it often involves some sort of emergency time where you get a call or a crisis has occurred and you literally have to drop and go and fortunately I have a very supportive supervisor who really understands the situation. I have very supportive staff and so was able in a situation we had fairly recently to be able to send somebody else to do a presentation that I was scheduled to do. My husband was able to do the same thing. We jumped in the car and went down and dealt with the crisis.
Fortunately it passed, but I think recognizing there are going to be other crisis. This is not going to be the only one. We’re going to be traveling down Interstate 95 again and again. I think recognizing that almost makes it easier in that you can put some contingency plans into play so that should the situation arise you’ve got your okay step one, step two, step three. We’ve got it down rote so to speak.
Dick Foley: Sure. But at the very least you were able to deal pretty early on with the whole issue of having them both accept the fact that they needed to be, for their own well being, in an assisted living facility, and they didn’t put up with what sounds like long standing and sometimes even bitter resistance that can come from some people about leaving their home.
Margaret: Not at first. I wouldn’t say they were willing. They realized that this was the only solution to help my father-in-law get stronger and healthier and so in a way that was a motivator, in that he was to walk the halls with his walker and build up strength in his legs and in his back and that really, that motivation to get out of assisted living could only happen if he was stronger really made a difference.
Dick Foley: How are they both---
Margaret: I can’t blame them for not really enjoying it because, for example, breakfast was a set hour, lunch was a set hour, dinner was a set hour and it was a complete change from their usual routine and I think this is one of the issues that many of these facilities are having to deal with is that one of the reasons people are unhappy is that there are institutional routines that people have to follow and that makes it very difficult to enjoy.
Dick Foley: And they underscore the fact that these folks have given up a large measure of their independence.
Margaret: Absolutely. And after being in the assisted living two months we knew that they were unhappy. It happened every phone call that we talked to them, but after two months it was really an ultimatum that we really want to go home and if you don’t help us go home we’ll take a cab.
Dick Foley: Oh my.
Margaret: So down we went to help them go home.
Dick Foley: So they have returned home at this point?
Margaret: They have returned home and we have a professional caregiver with them ten hours a day and it helped them enormously mentally. I would say they’re doing exactly the same thing physically, fairly sedentary doing the same routine, but they’re just happier mentally to be in their own environment.
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Care Giving from a Distance
Dick Foley: Absolutely and very understandable. Ron your mother is in her own home, but from you she’s three time zones away, so you have some very unique challenges in your role as a caregiver. How would you describe some of the most challenging of these and how have you overcome them?
Ron: That’s a very good question. I would say the most challenges have been not knowing what’s happening each day. If I were home or closer to L.A. I could stop by the house occasionally, I could call more often, I could physically sort of be there to check in to see what’s happening. So with the long distance that it is that’s one of the most challenging things is that I don’t know what’s happening and since I’m the only caregiver it causes a tremendous amount of stress and anxiety because I just don’t know.
Now I do have neighbors who will from time to time call and tell me about what they’re seeing or their observations. I talk with the caregiver just about every day and the caregiver shares with me what’s going on sort of with my mother. She keeps a log of what they do each day and from time to time she’ll send it to me. So, I would say the biggest challenge is just not knowing what’s going on each day, that is personally.
The other challenge is having to, it’s in the back of my mind, if I have to go home for an emergency and I have had to do that a number of times. And it’s the anxiety that sort of builds around how much will it cost, how much do I have, how am I going to, I have other responsibilities here, I have children, how much is it going to cost.
I would say the financial planning and management and making sure that I have enough emergency funds set aside that in the event that I have to leave at a short notice, which I have had to do a number of times that I have the money available and I can make the trip.
Also there have been a number of visits to the doctor’s office, follow-up visits that I have not been a part of, even though I have talked to the doctor as often as I can, if I call and get through sort of the web or the maze of leaving messages and hoping that she calls back at a time when I’m here. Not being able to talk directly to the doctor face-to-face regarding my mother’s condition, that’s another challenge.
Dick Foley: Tell me about the relationship, Ron, that you enjoy with the caregiver who actually is with your mother in her home every day.
Ron: Okay, after seeing how professional she was and how she was bonding with my mother and the level of acceptance that my mother had sort of developed towards her being in the house, I soon talked to her and said, “Look, you know I’d like for you to come work for me directly.” And what was happening is that the per hour fee was expensive and I knew that based on how much I was paying and when I found out what she was receiving I said, “You know there’s no way in the world that for all the work that she’s doing that she can’t receive more money per hour.” Now at the same time I don’t need to pay, I can’t afford to pay this much an hour at the agency rate. So I simply went to her and said, “This is what I’d like to do. I like you to come work for me directly. I’d like to develop a contract that’s got a payment schedule. I will pay you directly.” And it all worked out very well.
Dick Foley: How fortunate for you.
Ron: Yes it was very fortunate because at the rate that I was paying the resources that I did have were going to be depleted very quickly.
Dick Foley: Well and how fortunate for your mother too because she’s seemingly in a relationship with somebody whom she trusts and really knows who cares about her.
Ron: Absolutely. Now what was interesting about this is that when I had started the process of looking for someone to be the caregiver, my mother was actually part of that process.
Dick Foley: I see.
Ron: We went to the agency, after doing some research, we sat down the two of us with I guess with the social worker and we talked about what we wanted, what we were looking for, the kind of personality that the person we wanted the person to have. We also there’s certain foods that my mother likes and we wanted to make sure that the person could cook those foods. In addition to that we wanted the person to be familiar with the neighborhood and the community in which my mother lives, so we had, we just had a list of things that we agreed would be the ideal person.
So we gave that information to the agency and I asked for the agency to set up some interviews at my mother’s house. Not in the agency, but I said I actually want the person to drive to my mother’s house, we will be in the living room, we want them to come in and we will ask them questions. So the agency accommodated us on that and that’s how we sort of reached the decision because we interviewed her at the house, she’s familiar with the neighborhood, she had her professional credentials, she had the right temperament and it has worked out very well.
Dick Foley: Well and you’ve also shared with our listeners a couple of very important pieces of advice I would say about providing care for an older person an older family member when you can’t be there. Of course in your case, as I say, you’re across the country. So this must be a great comfort to you.
Ron: Without her my mother’s quality of life would not be what it is now. And in addition to that without her I probably would have to relocate back to Los Angeles.
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Making Decisions for a Loved One
Dick Foley: I discussed pretty thoroughly with Deborah this whole matter of decision making, Ron, and I’d love to ask you about that now too because has it been difficult for you to put yourself in a position of greater assertiveness as you have been called upon to make decisions for your mother?
Ron: The role reversal has been challenging, at least it was challenging earlier on when my mother would remind me I am you mother. You’re still my son and she would also remind me and say, “This is my house. You live in Washington, D.C. you’re just visiting. You’re leaving in two or three days.” Well she would always make it clear that she was still in control and that I had to listen to her. Now even though I was listening to her anyway, I think that it was good for her to feel, know her role and her relationship to me, even though sometimes it drove me crazy, I said well great she’s still aware of her role and my role within the family.
You had asked the questions earlier about what are the role of the doctors and physicians in decision making with the caregiving. One of the things that I have learned early on is that my mother, anytime I suggested something it was just a flat out no. A flat out no, you’re my son, you can’t tell me what to do. So I had developed a relationship with one of her doctors and I started thinking if I tell the doctor to tell her that she will do it because the doctor says so. So there was the issue about her driving and I had tried a number of ways to keep her from driving.
Dick Foley: Always a challenging issue.
Ron: Always a challenging issue, but neighbors had volunteered to drive, church members had volunteered to drive, and all of that, but driving to her was her independence. Well she had some eye problems and when I took her to the doctor’s office to get checked I asked the doctor to come out in the hall. So when he came out in the hall I said, “Doc, look I need her to stop driving because sometimes she’s getting lost. She’s had close calls. So far she hasn’t had any accidents, we haven’t received any calls from the Police Department, or someone else, but there’s lady here who doesn’t know where she’s going and this is where she is.” So I said, “Doc, I need you to tell her to stop driving and you can frame it based on the care that you are giving to her with her eye sight.” I said, “So when I get back to the office I’m going to say, ‘Doc, is there anything else that she needs to do?’” And he said, “Yes, I want you to limit your driving, as a matter of fact, why don’t you stop driving for a while until we get your vision, until we get eye problems corrected.” So she immediately said, “Fine the doctor said I should not drive, I’m not going to drive.” And that was two years ago.
Dick Foley: Oh my.
Ron: So it all worked out. But I’ve had to be innovative in working with others to get them to say certain things that she will agree to that when I say the same she doesn’t listen.
Dick Foley: Now you said, Ron, that you’re the only caregiver in the case of your mother. There are no siblings with whom you’re having to share these decision-making processes?
Ron: I have one brother in Texas but he is just totally not involved at all as my mother reminds me. What she has said is that he’s always been like that so you shouldn’t be surprised.
Dick Foley: Okay. But this then all falls on your shoulders and there are no confrontational issues with the brother. He just remains out of the process.
Ron: He remains out of the process. He’s the last of her family. All of her friends, all of her friends have died. She literally has no one.
Dick Foley: Margaret, let me touch back with you, if I may, on the whole topic of decision-making and how at first when you’re making decisions in behalf of a parent, or in your case an in-law, that’s probably not very comfortable at first. How do you get comfortable with that?
Margaret: You mean with me being an sort of daughter-in-law, not a daughter?
Dick Foley: Yes.
Margaret: Well it’s been easy because my husband is very involved in this process as well. And we, I feel like we really a team.
Dick Foley: Okay.
Margaret: So that it’s really a sort of two-pronged approach. It’s both of us. And they’re very accepting of that. And I think in some ways they’re more accepting of some things that I say as a daughter-in-law because I’m a little bit outside the family and they want to be, I’ll call it good. And so they’ve been quite responsive. And we took over because there were sort of family dynamics with my sister-in-law and my mother-in-law and this is why we have taken over the caregiving. Up to that time she was able to take my parents-in-law to the physicians, to grocery shopping and so on. And so it all came to a head in January and this is when we took over. And decision-wise it’s been, it hasn’t been bad at all. They do recognize that they’re in a situation where they do need help.
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Letting Parents Make Bad Decisions
Dick Foley: I wonder if it’s ever okay. If the circumstances ever would allow you to, at least for a short term, to allow your parents, in this case your in-laws, to make what you thought was a bad decision?
Margaret: Well it’s interesting. I’ve thought about that a lot because I do think you can put all kinds of things in place and there are still going to be things that happen. And a good example of that is that my parents-in-law visited with us just recently for three weeks. In fact we had just taken them back a couple of weekends ago. And on the way back we had to stay over night in a hotel because it’s a long journey and we don’t want to over tire them. And up to this point my mother-in-law has always been helped in the ____ to take a bath, either by the caregiver or by me.
And so we stayed overnight in this hotel and I find out the next morning that my mother-in-law took a bath by herself, just with her and my father-in-law to help her. And we were just really really fortunate in that, even though they told us later it took an age for her to be able to get out of the bathtub and my father-in-law had to help and it was very difficult. They didn’t call us in the next room, but that was an accident waiting to happen. And I guess my point is they are going to do things when they want and it doesn’t matter how much you plan for their safety and how many sort of contingency elements that you’ve got in place, they’re still going to do things and it could be some bad decisions.
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Decisions on Living Situations
Dick Foley: Absolutely. Ron, as you look at your mother’s situation do you ever project forward to the time when it just might be better for her not to be at home and could she ever come and live with you for instance?
Ron: You know that’s a good question. That’s one of the things that I think about all the time. Her, from her perspective, and this is the thing she says over and over again, “I want to stay in my home as long as I can. I want to die in my home.” She has said and reminds me quite often, “I have already made my peace with God and should I go I want to go here.”
Dick Foley: I wonder if all of you feel if that’s the most important aspect in an older person’s life is that independence and remaining in their own home.
Margaret: I agree. I think as much as we can keep my in-laws in their home where they feel at home and what sort of little piece of independence that have that quality of life will be better than if they were any place else.
Dick Foley: Sure.
Margaret: Even though that means that it’s more dangerous for them.
Ron: One of the important things that my mother has said is that and I know based on her condition it’s more challenging for her to learn new behaviors. She has said I know this house. I know where everything is. I know what to hold on to. I know how to live safely in this house and I feel safe here. And going to another place with another let’s say room layout, with other furniture, with other changes in her physical environment, at this point that would cause some stress for her.
Now I realize that the time may come where she may not know who she is and where ______. If and when that time comes and if I cannot afford to keep her at home then from my perspective it doesn’t matter where she is and I have been taking about should I bring her here, or should she stay in California and I take family and medical leave and spend some time with her. But so far as of now she is living safely in the house and she is happy in the house.
Dick Foley: Now Deborah you’re decision went the opposite way and your mother did go through this adjustment to a new domicile. How do you think looking back now over the, has she been in her new place for a little over a year now did you say?
Deborah: No actually her situation has changed quite a bit. We moved her down here five years ago in February and she moved to an environment that had independent living where you basically lived on your own, assisted living, and then health care where she is now. Just over two years ago she fell in her apartment and it was due to her osteoporosis. What often happens with people who have osteoporosis the bones break and then you fall or fractures or whatever have you and that was her situation. She didn’t trip over anything, she was just walking from her living area, where she was living independently going where she wanted to go. They just had to sign in and sign out but she had quite a bit of independence at that level of care.
But she had her thigh bone broke while she was walking from her living area to the kitchen area at breakfast time and it was very debilitating fall. Unfortunately she wasn’t wearing her call button, which was hanging on the bathroom door. And they didn’t find her until about six hours later.
Dick Foley: Oh my.
Deborah: Which was pretty catastrophic. She was sent to the hospital. It’s a very bloody bone to break. It was a total break and I usually I was going to call her that morning but got busy at work and whatever have you and didn’t call. They didn’t call me until about 2 in the afternoon and it had happened just after 8 a.m, they’re guessing. So anyway, but prior to that she was living in the apartment for about three years in the independent level and it took her a little while to acclimate, know where everything was, but she did acclimate pretty well, so that she was able to come and go very well on her own.
Dick Foley: So these decisions that are made in behalf of older people obviously all have as their basic consideration quality of life, but then they have to be balanced don’t they, Deborah, to take into account an older person’s safety.
Deborah: Yeah absolutely, absolutely and that included, at least for my mother, making sure that there were no rugs, excess rugs, throw rugs in the apartment due to her low vision. She too had to, as Ron noted, she knew where everything was by feel and she had to really get around and know where everything was and we were working with the blind association at that time so that she could differentiate colors and put pins, safety pins in dark blue outfits and those without safety pins would be black outfits. So she would know from that point of view which was which so she could be more independent and didn’t have to rely as much on me to help her with her clothing and or whatever have you.
Dick Foley: Over all how would you say she’s doing today?
Deborah: Well now she’s in health care because of that fall and she wasn’t able to acclimate, I mean rehab, due to her other medical issues. So she’s doing okay, but really wants, she hates health care. It’s a totally different social order. You have to give up all of your independence and she, although she has short term memory loss and some cognitive abilities are not as sharp as they used to be, she’s still is a very smart lady and knows what she wants and has lived independently and you have to submit to an outside force, which is totally against her sense of well being. So she’s doing okay.
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Communicating with Health Care Providers
Dick Foley: But now that she’s in the health care setting and you’ve really provided a wonderful segue to our next topic area, if you will, that presents for you as a caregiver a whole new set of challenges, and I want to talk with all of you about that. What’s it been like to communicate with health care staff? Not just doctors, but nurses and all the others when you don’t feel that decisions being made in behalf of your mother are particularly appropriate for her?
Deborah: It’s very frustrating and a lot of it stems from cultural differences. A number of the aids that take care of her day to day needs come from Sierra Leon and so you have a culture difference, you have a big language, although English is spoken it’s accented English, so the ability for my mom to understand is really diminished. And so what I’ve had to do is if something really bothers me I will e-mail the executive director of the facility, of the health care facility and have an e-mail conversation about this or about that. That seems to work out the best.
Dick Foley: How difficult for you was it to learn to be that assertive in that process?
Deborah: Quite difficult because I’m not of the point of view that I was expecting people to be professional and act in a certain way and sometimes things are not done that way. So it’s been emotional and there’s never a day where there isn’t something that doesn’t happen, or happens that shouldn’t happen. And as I mentioned everybody has a different way of communicating and you have to understand their stresses.
They’re rushed, they’re not paid well, there are a whole slew of issues from their point of view, so I’ve learned the past two years since my mother has been in health care, things that used to send me off immediately into an emotional triad has been brought back down to surface right now and as I put things in a different perspective and try to okay now how do I deal with this issues. What’s the best way to deal with this issue?
Dick Foley: Any challenges in the area of the administration of medication, particularly in the area of pain management?
Deborah: Not right now because my mother is not under any of those types of issues, does not have any of those issues, so that’s not been a problem.
Dick Foley: I know it can be in some cases. Has that ever been an issue for your mother, Ron?
Ron: The only, not with pain. The only two times when we’ve had, where I’ve had to fly out there for an emergency it was because of medication errors on the part of the doctor. At one point she was given medication that was too strong. She fainted. And another time then they adjusted and then it was too low. So, medication errors have been the cause of two emergency visits or trips for me out to Los Angeles.
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Communication: Race and Culture
Dick Foley: And what have been the most challenging parts of dealing with health care providers and communicating with them in the role of advocate for your mother?
Ron: This is sort of the last thing I had expected in some instances that I would have to deal with what I perceive an issue of race in my mother’s sort of health care situation. It sort of manifested itself a number of times by manner of communication as well as manner of communication, manner of speaking, certain assumptions that were made about my mother and her education level and her life style. And I’ll give an example: when we first went to her primary care physician without even much of a getting to know you, getting to know the patient, kind of small talk, she immediately began, she basically said, “Are you poor?” And I said, “Why are you asking her if she’s poor? What does this have to do with the medical treatment that we’re here to get some consultation for?” “Well when people like her come and most of the time they are poor and so there are certain protocols that we follow for people who are poor.” So I said, “So how do you know she is poor? What do you know about her?” “Well where does she live in South Central Los Angeles?” I said, “What do you mean that she lives in South Central Los Angeles?” So I had to work through a lot of that in a number of instances where certain assumptions were made I felt based on race.
Dick Foley: Well if other African Americans are listening today they, I know, would love to hear how you worked through that. What sort of a tactic did you use?
Ron: What I had to do was basically cultivate a relationship with the primary care provider just to say, “I am the son, this is my mother, we’re here to get treatment, we would like to sort of make sure we stay on focus with her treatment protocol. I have e-mail, I’ll be talking to you throughout her condition.” And so I think it was primarily as a result of them getting to know me and then from that they began, it changed their perception of her because all of a sudden the son has health care power of attorney and I have to talk to him.
Dick Foley: Exactly.
Ron: So that put me in a position where they had to talk to me and in the course of developing the relationship and cultivating the relationship the treatment turned around. At one point I did have to go to legal counsel of this one hospital to basically point out to them that some desperate treatment that we were experiencing and that while I don’t want them to get involved at this point I am experiencing at the doctor/patient level. I think that they sort of got the word back to the primary care physician and others that I had mentioned and now everything works well. I always say that for those that don’t have sort of an active caregiver who is an advocate for them the experience can be pretty devastating and especially at a time when they’re sort of at their weakest, and most vulnerable.
Dick Foley: And for that reason, too, you make a very valid point and that is in the document called the living will you know someone like your mother, any older person for that matter, can name a health care agent or someone to advocate them especially when they are in a position where they’re unable to make decisions on their own. And boy that sounds like in your case that’s been very important.
Ron: It’s been very important, but it’s not just with, I found that it was not just with the health care issue, it was also at the bank, at the store, phone calls about the mortgage, and things like that that I had encountered _________ and then I started thinking unfortunately sometimes the issues of race do not change as one ages. Just as one might have to deal with it in their 20’s, 30’s, and 40’s, that same individual have to deal with it in their 60’s, 70’s and 80’s and I think that was a big shocker for me.
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The Most Unexpected Issues of Being a Caregiver
Dick Foley: I’m anxious to hear from all of you as well about those things about which you may not have had the faintest clue early on in this process and have had to learn as you have grown in your role as caregiver. What would some of those things have been for you, Margaret?
Margaret: Dealing with medication. My mother-in-law takes about ten and my father-in-law takes about half a dozen and it’s really understanding what the medications are, what they’re for, when they’re to be taken and monitoring it.
Dick Foley: And what the proper dosage should be.
Margaret: Exactly what the proper dosage should be and setting them up and working with the caregivers so that there are sort of pill dispensers, so we fill them up every two weeks and it’s morning and afternoon. And I think what we found some of the issues are is that medications have side effects and some of those side effects need medications. For example my mother-in-law takes a medication that causes her to itch so she takes another medication that deals with the itching. Another med causes her to cough so now she has to have something to combat that and it’s a balancing act and at some point we, my husband, was quite assertive about this, asked the doctor if we could get a review by a consultant pharmacist of her medication just as a sort of security check. And the doctor agreed to that and it was done and everything was okay, but it gave us a peace of mind.
Dick Foley: Yes. Deborah, how about in your case? What are the things that, I mean obviously you have learned a great deal and gone through a number of changes with your mother, what have been the most profound of those?
Deborah: Well I think knowing which, what is a true emergency and what isn’t. There were throughout after my mom’s fall two year’s ago she was in and out of the hospital six times, all ER situations, emergency situations. So reacting to if they say things that were truly an emergency and then things just relax it’s okay it’s just a process. And also it was as Margaret noted too with medications and side effects and keeping track of them and what they do. I learned that a good eleven or so years ago as well during a previous situation when my mom was in the hospital for quite a bit of time and very very serious.
My mom’s gone through a number of very serious medical issues being in ICU for a long period of time, working with the doctors, trying to negotiate with the doctors and to give you more information, and the situation my mom was in eleven years ago after she had a pacemaker implanted and then got up and broke her hip while in the hospital and the hospital didn’t call me right away as they should have done. In working with the doctors there and having them go through notes, which they’re supposed to do, and trying to get the whole picture, and getting the doctors also to work with each other. They often don’t very well.
There are a whole slew of issues and also trying to when you are in a hospital situation and are assigned a doctor and you don’t think that doctors are providing good care how to work around that, or to solve that issue. There are many things like that that I’ve learned going through and finding out things the hard way because a lot of these issues are not written in books, this is how you fix this, you have to live them and experience them and figure them out. Working through the system in the hospital and then deciding no this is not going to work and finding or trying to have a good, or having a good relationship with a doctor you trust so that doctor helps you.
Dick Foley: Would you say, Deborah, is the most difficult aspect of the caregiver role, the whole medical piece?
Deborah: The medical piece is very difficult and knowing, since my mother was in Hospice as well and thankfully has graduated through that, knowing when in your heart when a recommendation provided by the medical establishment is the recommendation to follow. It took quite a while for us to determine that yes indeed my mom did require hospice care and once we got to that point it was okay, but it was a big learning curve to get there.
Dick Foley: Yes.
Ron: I’d like to share something on that question also.
Dick Foley: The question of the most difficult aspect, Ron?
Ron: Yeah uh huh. I agree with both Margaret and Deb have said about the challenges of medication management and the coordination of care. What I would add to that is coping with the stress and the anxiety and the pain and sometimes the anguish that I experienced as a caregiver. In other aspects of life there are certain things stressful situations that you can work your way through it, could be work or maybe something at home, but the kind of stress that I have experienced in the caring and my relationship as a caregiver to my mother is sometimes I feel as if it’s going to be like this for the rest of my life.
Dick Foley: Right.
Ron: I’ll never come out from under of dealing with the stress. I would say on any given day whatever I’m doing that probably 35% of me is occupied with a thought of caregiving, even if I’m not directly addressing something, it’s just the fact that I am the caregiver. I’m not always here, so to speak. And where the challenge comes in is I’m expected to be 100% as a family member. I’m expected to be 100% in my work life. I expected to be 100% in all other aspects of my life, but I’m not always there, and so that has been the most challenging to me.
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Dick Foley: People would want to know then, Ron, not just from you but from our two other guests as well, what do you do to take care of yourself? How do you avoid just burning out from the stress you have so wonderfully described?
Ron: It’s very difficult and I think as long as I’m a caregiver I will always have it. I’m just trying to focus on coping with it and continuing to stay positive by use of a lot of prayer. I have understanding friends who provide encouragement to me. I just happen to work for an organization that has been very good about providing support for caregivers as Margaret has mentioned. But it’ll never really go away, and as I mentioned it’s the depth of it is something unlike I never experienced before. So to me it’s almost like the question of living and coping with this because it won’t go away, but the challenge being trying to remain positive, of trying to keep things in perspective. But there are always the many of nights of lost sleep, there’s always I’m in meetings at work and I’m listening, at least I look like I’m listening, but I’m thinking about something else, caregiving issues, so it’s been coping with those kinds of challenges. I mean that’s been the most difficult.
Dick Foley: How about you, Margaret, for you and your husband? Again you like Ron are doing this from a distance so how do you take care of yourselves when you’re worrying about his parents?
Margaret: It’s hard. I guess a couple of things. Mine is having humor. My husband and I do look at the funny situations that have arised and we sort of laugh about them and that sort of diffuses the stress. And then I’m a big believer in sort of physical activity. It’s helped me deal with stress oh since day one in my life or when I got to the point of having stress. And I encourage my husband to work out. He needs a little bit more encouraging than I do, but I truly believe that helps. It diffuses a lot of the pent up issues.
Dick Foley: People listening, Deborah, are going to want to learn from all of you how you take care of yourself while putting so much thought and effort into caring for others. What works for you?
Deborah: Oh I wish that was so easy to answer to say this does it all the time and I will admit that I at one time I was, I agree with Margaret, very busy with physical activity, getting out and walking and running and bike riding and doing all those things. That’s the stress of trying to find the time to do that and sometimes it’s stressful thinking oh I’ve got to get out and run. And I do feel better after I do run, but it is a real trick to focus and put it into my schedule. And I have to admit I have not been very good about getting that into my schedule and taking “care” of myself.
If I can take a few days off and as Margaret and Ron have both noted having an employer as we do that’s understanding of our situation and supportive and knowing that if I need time I can take time and even just taking a couple of days off and just not necessarily going anywhere because I do get over to see my mom every night at least to make sure things are going okay and to give her a sense of reality that there is a real world out there and it’s not all insane nursing help because it is such an insane situation to be living in. But it is a real trial to get that in and I try to get moments of at least thought slow down and at least a little exercise before I go to bed, that type of thing.
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What I have Learned About Myself
Dick Foley: Sure. You know the other thing I’m curious about and I’ll go to all of you for this response and that is what have you learned about yourself? And Deborah as long as you and I are talking we can just start with you. How have you grown? What have you gained from this whole experience of the role of caregiver?
Deborah: Patience. A lot more patience. More understanding of myself a little bit knowing my point of reaction and toning those down a little bit. So as I say I don’t over, become over emotional. That’s the toughest, one of the toughest parts because you’re dealing with your parent and that’s an illogical area. You don’t always function logically when you’re dealing with an issue of your parent and danger to your parent’s health. So that will naturally set off emotions that you don’t always have control over. So, I’ve learned to recognize that a little bit more and really appreciate, as I say, mentioned earlier, the time I’m now spending with my mother trying to make it quality time.
Dick Foley: There you go.
Deborah: We talk about the past and ‘cause that’s where she naturally goes to and she thinks I grew up on her block. I say well, no, that’s a little bit before my time. And talk and really dig up those memories a little bit and reminisce even though I wasn’t alive during that time. But it really gets to be funny, as Margaret had noted, to sometimes have these conversations with your parent and you just sometimes we’re talking about the same thing but it’s not the same thing, or it turns into who’s on first, no and going down that road and just having little jokes and something that was very, a real gift, one of my mother’s doctors had given me a title of a book called Learning How to Die or something along that line. It was written by Sheldon, a physician, and I don’t recall his name, his full name, but reading it was basically from a doctor’s perspective about how we die and the natural progression of steps involved in death.
Dick Foley: We’ll explore that topic with the others as well because I’d like to hear from each of you the resources you have called upon and those you might suggest for others. Margaret, what have you learned about yourself, you and your husband? How have you grown in this process?
Margaret: I think it’s finding out the depths of patience that’s required but also finding out that it’s there. And there are times when you lose patience and we particularly found this out when we had my in-laws for three weeks just recently and you’re living with them everyday and you come home from work and you’re cooking and you’re washing and you’re cleaning and you know finding out that there are times when you’re going to be absolutely driven up the wall, but then drawing on that patience thinking that this time is valuable and there’s not much of it left.
And for me I wasn’t able to look after my parents, my mother or my father, when they were in England in the last phases of their life, and so I draw on that to in the hope that I’m giving to my in-laws. It’s very sort of special. And like Deborah I have been talking with them about their past. And for me it’s a little bit novel because they’re growing up not only was it a different generation but it was a different country and so that’s been very much a delight.
Dick Foley: Boy I sure seized on your words though, this is precious time and there isn’t a lot of it. So you have to put a high value on it. Ron, how about you? How have you grown? How have you changed?
Ron: When I started caregiving as a guy, it was very difficult for me because well you know I’m just a guy. I would say that learning about the sort of end of life issues, so to speak, I think I have a greater sense of what unconditional love is and exactly what that means in a relationship in terms of giving and sharing. I’ve continued to sort of grow, even though my mother does have some diminished physical and mental abilities, I think you need to learn from her in looking at how she’s coping.
Dick Foley: I think it may have been Margaret who mentioned humor. Have you been able to hold on to your sense of humor?
Ron: Oh, absolutely as a matter of fact humor does play a very important role in helping me to cope. I mean there are things that happen where the only thing you can do is laugh and sort of look on the humorous side of it. And sometimes even my mother laughs at her condition or she’ll say something like, “Do you think I’m crazy?” And then we’ll just sort of banter back and forth on that, but I would say as a man and as being the primary caregiver having to deal with certain issues such as toileting, dressing, and things like that towards my mother I would say I’m a better person than I was seven or eight years ago because now I now what is important about life.
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Resources That Have Helped
Dick Foley: What kind of resources Ron, have you called upon and might you recommend for others? Are there websites, have there been readings that you have done that have been helpful?
Ron: You know I really didn’t do a lot of advanced research sort of going into this because I had no idea what being a caregiver was. Just whenever I sort of reached a decision point I would either maybe go online to see what information was available as it related to help me make that particular decision, talked quite a bit with other caregivers to learn from their perspective how to cope with certain situations and I also sort of kept my own database of being within the family and knowing what the values are and sort of the standard of living and the expectations and have done everything that’s been based on that experience.
Dick Foley:: Sure.
Ron: As the basis for the decisions. So I have not read any books. As a matter of fact I’ve tried to read some but it was so painful for me to read them because in turning the pages I would say, wow, I don’t want to hear about this.
Dick Foley: Yeah, that’s where we are as a culture I’m afraid. We’re not comfortable around the whole topic of end of life issues if you will, or facing death directly. It’s difficult.
Ron: And especially when I get to the part where it sort of says this is what you’re going to have to deal with next and this is what you’re going to have to deal with.
Dick Foley: Right. Here’s what you have to look forward to.
Ron: Yeah. I need to deal with things as they come to me and I don’t want to sort of read a lot of the literature, which would suggest a certain course of care for my mother that really may not be appropriate for her. I know this might sound a little backward, but quite often I just wing it and I’ve made some mistakes. I literally have no one else to help me with this and so it’s just been a combination of, as I said, going to the website and getting an answer to a particular question, talking to others that are caregivers. I’ve learned more in talking with other caregivers, believe me, than I have reading a lot of books.
Dick Foley: That’s a very valuable point. Margaret, what how about you? What has helped you the most, or any resources you would recommend to others?
Margaret: I think one resource and it’s not a book or a magazine or anything, but it’s a night time watch system where my in-laws wear a bracelet or a necklace that has a button so that if there’s an emergency they press this button and then there’s a responder list. The professional caregiver is the first one, a nephew who lives near by is the second one and we’re the third one, etc. And they actually had to use it and it works and that’s been great for us. At some point we’ll need a night time caregiver but for right now that’s been a great resource.
Dick Foley: Okay.
Margaret: The other thing is caregiving-newsletters, articles in magazines. I’ve dipped into some books relevant chapters, but a site and I think it was in the National Council on Aging and I think AARP also directs you to this area called benefits checkouts and it’s a way to do a sort of an analysis or assessment of your, of my in-laws and we did this. We kind of went through it and did an assessment to find out where we really needed help and that was a good way for us to get focused.
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Lessons Learned about my own Future
Dick Foley: That’s an excellent point, thank you. I will turn to you each now just to look for some final thoughts. Anything that you’d like our listening audience to take away from this discussion today and it might actually include some thoughts of what you may have learned about your own aging process in helping someone else who is at that stage of life, what lessons might you have gained that you can apply for yourself later in life. Deborah would you like to start?
Deborah: That’s a good question thinking of, I think about myself down the line and fortunately say to myself, “Oh boy, now this nursing home scenario that we now have that’s quite common really needs to be changed,” so in that it love to see some changes in making things more personalized and hopefully things will change down the line because I give my mother a lot of credit. She’s very resilient, she’s very strong and she can change despite her age. She has been able to adapt to situations that have not been in her control and not in her bailiwick of even the wildest thoughts of what would happen to her.
So I give her a lot of credit and quite honestly with all the situations that she has gone through don’t know if I could have been as successful in handling them as she has been. So, I have a greater admiration for her and for people going through this. And everybody in the nursing home has a particular story.
One of my regrets is that there are not enough people sitting down and taking time with them to learn about their various stories because I feel they’re often neglected audience and neglected group of people who are left alone in the time of life where they should not be left alone. So I have a greater appreciation for the folks having to live in nursing home. They don’t want to be there. It’s not their choice. It’s out of need that they are there, so if anything it’s a gift to give to people of time that you can to spend with them.
Dick Foley: What a lovely thought to have shared that you gained admiration and respect for your own mother as she nears the end of her life. I think if people take that away from this discussion today that’ll be immensely valuable. Ron, what about you? Final thoughts.
Ron: I would say that final thought just in terms of life or perspective on life has a way as the result of being a caregiver. I mean there’s some obvious things that come to mind in terms of what I need to do and that’s I guess they would call it what it is legal, the estate and financial planning.
Maintaining good quality relationships with friends and loved ones because when I look at my mother’s life and how much love and care that she has received over the years and she says it all the time, she says, it’s been relationships and friends and family that have kept me alive today. So I’d say maintaining relationships enjoying life to the fullest because it is short and the day will come when I will have diminished mental and/or physical abilities and will not be able to do a lot of things that I’m able to do now. The importance of the work of caregiver. If it wasn’t for caregivers it would be hard for me to imagine my mother’s quality of life now and given that I’m 3,000 miles away caregivers are so very important and they make such a big difference.
Dick Foley: Absolutely.
Ron: I would also suggest, or not suggest, but I would say that, and I used the word earlier about unconditional love, and that basically is what it is. When you’re caring for someone, especially that someone who’s at the sort of end of life, and when you think about all the things you have to and all the roles you have to play, it’s unconditional love. And I think that’s caregiving. Anyone that does that and does it full time it’s one way to express unconditional love and I can only say I’m a better person for it and as stressful as it is and with all the times I think I’m losing my mind, in the long run I’m a better person from it. And I think anyone who does caregiving will only grow and become a better person also.
Dick Foley: Well said, Ron. Margaret we turn to you for the final final word.
Margaret: When I think that it was only in the last few years that my in-laws who are about 92 got their health problems I think what does that mean for me? I think wow, can I get to be 87 and not have any health problems? So I think about what I can do to keep healthy for as long as possible. I also think about, as we think about our retirement, where we want to live, and the kind of house that we might live in, I think about what kind of house would be good as we grow older; one level, and no steps, and really thinking about that. That’s really come to front of mind for me. And then the other thing I sort of think about too, and I think about how there’s a huge opportunity for all these service organizations that could help caregivers, volunteer drivers, in-home care. There’s a huge need out there that’s not being filled.
And I want to agree with Ron that I think about as I age the importance of friends and relationships and really wanting to maintain and build those because I really do believe that they are essentially very valuable as you get older. And I also want to reiterate what Ron said about unconditional love. I think being a daughter-in-law is different from being a daughter, but looking after my in-laws I’ve really come to know and appreciate them in a different way and really come to love them as a daughter. And I think this has been a truly worthwhile experience in that regard.
Dick Foley: I think it has come through and shown very brightly in all of your remarks that all of these efforts that you have all made have been based in love. And so on that note I want to thank all of you for participating today. I know I learned a great deal listening to you and I hope our listening audience has learned as well. As you listen to our discussion today if there are topics that you would like to learn more about, explore the information from other people in my health community, also feel free to contact the community manager and let them know about additional information you would like to see in this web community. We know that we weren’t even able to cover just even a small fraction regarding the issue of caregiving but it’s a beginning and certainly a topic that we’ll revisit in the future. It works best when you tell us what you need and what you’d like to learn and then you participate actively with us. So I’m Dick Foley. Thank you for spending time with us today. We’ll see you on our next broadcast.